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Original poster

I'm not OK

463 replies

Willowkins · 26/03/2017 14:17

My lovely DH was diagnosed with Stage 4 cancer with mets in the liver and lungs last year. After 6 long months of chemo we have the scan and results this coming week. I have been holding it together all this time. The thing is I suddenly realise I am not OK. I know this sounds selfish and this shouldn't be about me but I feel so sad. I was listening to Run by Leona Lewis and I just burst into tears. Also, I've realised that I need everything to be perfect to feel safe but of course it's not perfect so I get really cross. I wanted to punch a man in his car earlier today. This is not OK is it?

OP posts:
Chasingsquirrels · 01/05/2017 19:58

Not sure what Ensure is Selena, but John had Fortisip and Fortijuice both of which he hates the taste of. Is your DH having them for the calories? John was advised initially to have milky drinks made using milk and milk powder to increase the calorie count.

Chasingsquirrels · 01/05/2017 20:00

And sorry about your friend Flowers.
It's very hard, a man John met during his hospital stay last May who he kept in touch with died in August and that really knocked John for six.

FuzzyCustard · 01/05/2017 20:03

My DH survived stem cell transplant (and severe mucositis) by drinking a LOT of milk. Just plain milk. He really didn't like the fortisip thingies (or similar) and still uses milk to slurp down his (many) daily drugs.

Funnily, he still dislikes the taste of water, which he used to love. But pomegranate drink is a recent favourite.

SelenaValentina · 01/05/2017 23:10

I've found some Horlicks in the cupboard!!! But best before 2014 (housewifery skills, 0 out of 10 Blush). He used to love it and Ovaltine, might get some tomorrow.

Now what do I do with all these Fortisip bottles - why can't the NHS/pharmacy give you one of each flavour to try, rather than 60?

But thank you for the milk idea. Flowers

FuzzyCustard · 02/05/2017 08:27

The other thing that is popular with DH at the moment is Morrison's flavoured milk...chocolate and strawberry. I suppose they are a change (and still help the pills go down).

Your Horlicks sound about as old as some of the stuff in my cupboard... I join you in poor housewifery skills -no shame there!

Chasingsquirrels · 02/05/2017 08:28

60?? John had a starter pack of 1 of each. Our district nurses are happy to take them off your hands.
Best before is okay, just might not taste as nice.
If you are looking to bulk calories it was described to us as fortified milk I think. You need milk powder to make up as normal milk with water, full fat not skimmed - the only brand we found was Milo and Tesco stocked it. Then instead of making it up with water you make it up with the same volume of normal milk.
I'd keep an old 4 pint milk bottle and make up 4 pints - then keep them in bot bottles as it makes up to more than 4 pints total volume.
Then use as normal milk, in milky drinks, on cereals etc.

Original poster
Willowkins · 02/05/2017 19:04

DH is radioactive! His blood sugar was normal so he was finally able to have the PET-CT scan. I am so happy and relieved.Smile

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Chasingsquirrels · 02/05/2017 19:06

Good news Willowkins, fingers crossed for good results.

Original poster
Willowkins · 02/05/2017 19:15

Thanks squirrels hopefully we will hear next week - but because I don't/can't quite trust, I will phone the consultant's secretary again tomorrow to make sure we're still on track.

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SelenaValentina · 02/05/2017 19:31

Hurray Willow and fingers tightly crossed. Agree with you totally around the 'trust'.

Thank you for that, squirrels. Ensure is virtually the same as Fortisip. Got some gold top milk in Aldi, will have a mooch in Tesco (though I dislike our Tesco 'superstore') asap. Also got a Shaken Udder Vanillalicious milk shake in Booth's because the name made me laugh!

FiveGoMadInDorset · 02/05/2017 22:37

That's great news willow and fingers crossed for a position be result.

selena how odd, DH was diagnosed with angina in 2015, they still haven't decided whether he had a heart attack or not, had 2 stents put in last February, went to a follow up scan in August where they found the cancer, formally diagnosed it as stage 4 in October.

DH is struggling with carbs at the moment, can't eat bread at all and not a lot of pasta or potatoes, so back to Tom Kerridge's new book for some inspiration. The very sad thing today was that although he can sign his name that is it, he has been talking about numb hands but it really hit home today.

FuzzyCustard · 03/05/2017 17:43

Good news willowkins fingers now firmly crossed for great results.

DH had his usual weekly hosp appt today...not a lot has changed (but this is good thing). They are getting him off his anti-rejection drugs (an immunosuppressant) at some speed in the hopes that will give the donor cells a bit more encouragement. They are being a bit weedy at the moment!
Apart from lots of sleeping, he is doing ok in himself and that is good.

Original poster
Willowkins · 03/05/2017 18:41

DH off out for a little walk but I'm just too tired to go with him (had a little nap earlier). I unexpectedly have a day off work tomorrow though and hoping to treat myself - maybe swimming. Anybody else got something nice to look forward to?

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tasmaniandevil · 03/05/2017 18:48

I'm glad he's had the scan Willow, DH's was cancelled at the last minute due to staff sicknessSad Back to waiting. Do you know when he gets the results?

We're hoping to go to the theatre on Sat so looking forward to that.

Original poster
Willowkins · 03/05/2017 20:08

Hi Tasmanian. Last minute cancellations are the worst! All the pent up stress and it just floats there. I hope you get a quick reappointment and it goes ahead this time.

We should hear the results next week but of course I'm not holding my breath - er actually yes, yes I am holding my breath! Hmm Must. remember. to. breathe. normally.

I hope you have a lovely time at the theatre. SmileFlowers

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FuzzyCustard · 04/05/2017 10:11

Envious of the theatre! Because of DH's immunosuppression he's not allowed anywhere where there are lots of people, so for the past 8 months it's just been the two of us (Visitors (germ free) permitted in ones and twos.) Oh, it is hard going, missed out on so much - parties, family occasions, concerts, everything social. But we have to do it to keep him safe. Only another couple of years of it (we hope)!

Original poster
Willowkins · 04/05/2017 10:30

Fuzzy that sounds so hard. Cancer takes hostages no mistake.

My swimming has melted away because have to stay in for a call from the GP. My treat therefore is now the rest of the Easter egg chocolate and a cup of raspberry tea Brew.

That's how it goes [big sigh]

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tasmaniandevil · 04/05/2017 10:38

DH gone to GP this morning because of continuing leg pain and has been sent for an X Ray. Does anyone know if they tell you if they can see anything there and then? Can't help but worrySad

Chasingsquirrels · 04/05/2017 10:58

Just wanted to pop by and send you all some love x

Original poster
Willowkins · 04/05/2017 11:38

Flowers I don't know the answer to that one tasmanian but just wanted to send a handhold. You've been a bit worried about the leg for a while if I recall so hopefully the results will come quickly (and show all okay) and at least you'll know.

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tasmaniandevil · 04/05/2017 11:44

Thanks for that. They have rebooked his CT scan for Monday and he is having the X Ray now. His bloods were fine last week, so they don't seem worried about excess calcium which is a big red flag for bone mets.

I'm glad my kids are at school as I am really struggling today with it all.

Darlingdahlia · 04/05/2017 13:02

I haven't read the whole thread but I just wanted to say that I can totally relate to how you feel. My son has a life limiting condition that means he is also severely disabled, and it's about 2& a half years since we found out (he is 3). At the beginning I coped well, because it was such an extreme shock and so new and awful. I felt manic but ok, as well as often very upset. As I have got used to it and the shock has died down I have had lots of times where I think I'm fine but I feel very angry about things, often entirely unconnected to my son. I feel very tired and up and down and like life is so fragile and could fall apart at any moment. I think all these things are normal but they are confusing things to feel. I have seen a counsellor which I have found helpful, and could be good if you can find the right person. It's easier talking to someone unconnected because you can be selfish and also talk about things you are worried about without upsetting those close to you and your husband. I am so sorry to hear you are going through this and I hope you find yourself well supported and find ways to cope. Exercise has been important to me. Good luck.

SelenaValentina · 04/05/2017 13:14

tasmanian - no they don't usually say anything there and then as X-Rays have to be assessed by the Radiologist.

Darling Flowers

We've been to Oncology today. No more active treatment, MacMillan nurse and District Nurses will start calling in. No time scale given but recommended to enjoy life and have goals in place. Given OK for week in Suffolk week on Monday. Grin

Not sure about the raspberry tea, willow! But I have an Easter egg, Green and Black's even, sitting on the sideboard which I think it's time to demolish!

Chasingsquirrels · 04/05/2017 13:17

Selena just hugs.
Where in Suffolk are you headed? I'm just on the Cambs / Suffolk border.

Dahlia Flowers

tasmaniandevil · 04/05/2017 14:15

Oh Selena, hugs to you.

GP said DH could have osteoarthritis in his hip so hopefully it will be this and not anything worse. X Ray results back in a week. I am working so will try and keep my mind busy.